Tuesday, January 27, 2009

Surviving the NICU- A Parent's Guide

I've pretty much summed up our experiences in the hospital.  Before moving on, I thought I'd jot down a few things we learned.  

1.  Get help!  

Whether you have older children at home or not, you need some extra assistance.  It is not the time to be Supermom or Superdad.   When people ask if they can help say YES!  If you're not sure what you need yet, let them know you appreciate the offer and will get back to them.  Look for help from your family, friends, neighbors, church, and social groups.  People really do want to help; it's a way they can show love and friendship.  That said, most people do not know what to do.  Here are some suggestions:

Childcare for older children
A friendly ear to listen, or shoulder to cry on
Perhaps a ride up to the hospital- we didn't ask for this, but it was a lot of driving and occasional company would have been nice.
Laundry or housework
Yard work-  many things take a back seat during times of crisis.  The flowers and vegetables are two of those things.  
Someone designated to take/field phone calls

And I'm sure there are others...

2.  Get a hospital-grade breast pump

If planning to planning to provide breastmilk for your baby you'll want access to a quality pump as quickly as possible.  I already had a hand pump, but that was insufficient for all the hours I was away from the hospital.  Plus it didn't do nearly as good a job as a quality electric pump or a hungry baby for that matter.  I rented a hospital grade for a brief while then bought a Pump In Style which worked very well.   

3.  Essentials for the hospital

I packed a water bottle, a camera, a notebook for jotting down information from the doctors or nurses, journal articles relating to neonatal diabetes, a laptop, a granola bar, extra nursing pads, extra regular pads (I was still recovering from childbirth after all!),  hard candy, labels for Bean's milk containers, a sharpie, some money, and the Wall Street Journal or sometimes a book.  It was a pretty full bag!

4.  Rest, rest, rest!

Very, very tough to do, but vital.  Rest is especially important when recovering from birth. I found that I needed some periodic naps.  A nurse once commented, "Oh when he comes home you'll wish he were back in the hospital at night so you can get rest."  Uh, no!  I looked at her like she was out of her mind.  The pumping in the middle of the night and all of the worry wasn't exactly restful as it was.  When he did come home it was a brutal sleep schedule, but not once did I wish him back in the hospital.  

5.  Take advantage of any sibling classes/activities at the hospital

They had a great program where older siblings could decorate their own cloth NICU baby with the wires and tubing to match their own baby brother's or sister's.  Then there was a little class taught by an RN about the machines and equipment around their brother explained in simple, not scary terms.  They also got to decorate a framed picture of baby Bean.  The hospital was very sibling friendly and there was a wonderful playroom they could visit, and of course they got to see baby Bean a few times.  My older two children pretty much took everything in stride thanks in part to these programs.  

6.  Hold and rock your baby as much as possible

Spending time rocking, holding, nursing, or even just touching gives a smidgeon of normalcy in a difficult situation.  I found rocking Bean a great way to soothe both of us, and I could close my eyes and imagine the hospital surroundings away.  

7.  Ask questions!

The nurses, nurse practitioners, and doctors were appeared very happy to answer questions or address concerns we had.  We found that even if we missed the rounds, a doctor or nurse practitioner would be more than willing to come to the bedside when they had a free moment to talk to us.  While away from the hospital, call and ask about your baby.  It's not the same, but will give you some peace of mind hearing how things are going.  

8.  Along the lines of #7, Educate yourself!

For the most part the more I knew the less scary and more confident I felt.  I read articles on neonatal diabetes, both permanent and transient since we didn't know right away which he had. I also read about managing diabetes in young children and learned about how the pancreas works, the KATP channel, different kinds of insulin, how to administer shots, A1Cs, glucometers, and on.

9.  Sometimes a little company is nice

Most of the time I was quite content just being with Bean, but occasionally it was nice to have a friend there in the hospital to talk to as well.  

10.  Take some time away from the hospital to do things you enjoy.

My husband and I went to a restaurant for a lunch date.  It was nice to feel the summer breeze and just talk.  Another time my husband went up to the hospital while I spent time with the kiddos, made them pancakes and read stories.  I also enjoyed soaking in a hot tub after a wearying day.  

That about exhausts what I can think of....
I'm sure others can think of more.  Anyone?


Anonymous said...

Hi, I was hoping to find some more blogs passes January. I have a 11mo old who was diagnosed with neonatal diabetes just before he turned 3 mo. since it is so rare there really isnt anyone to talk to who knows what I am talking about. Everything is pretty good with Luke but now that he is getting older his eating habits are changing which of course makes for having to adjust his insulin. We are now having to check him at night because he seems to drop low at this time, so that becomes stressful after awhile.
Well, if you get a chance to check this I would love to know some more about how Bean is doing and some of the things you do as far as feedings and things like that.
Thank you


Anonymous said...

Same as the comment above... it would be interesting to know what happened.

Did they ever find out what type of neonatal diabetes it is? Was it transient or permenant? Was it one of the types that can respond to a sulphonylurea?

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